posted
I tell everyone... I am very open about the disease and all that has come with it. Sometimes, it is really hard to be 100% honest, but it feels good to get it all out there.
posted
I try to tell everyone. I met someone today that took antibiotics for a while. Has seizures and arthritis, bit thinks that is all seperate. I told her she needed to suspect Lyme and coinfections and check it out. I know she didn't listen, but that is totally up to her.
I knew nothing until I got it. And I still didn't know enough early enough, and if I can help anyone I will. I want to help make a difference. I've helped a number of people get the correct treatments and I am so glad.
I feel we are responsible to get the word out, because it is a complicated disease and the most doctors don't understand the severity of it.
-------------------- Gail Posts: 234 | From Sterling, Ma | Registered: Jan 2008
| IP: Logged |
I tell many people that I encounter because the more peple who hear about it the better it will be for us and our doctors in the long run.
It has been my experience, however, that close friends and family can be the least supportive.
If you really want to talk Lyme, come here or find a local support group. Most non-Lymies have a low tolerence for the day-to-day challenges of Lyme and Lyme treatment.
Let's face it. Your family and close friends have to deal with the consequences the most.
If you find people pulling away. Just stay strong. Do the treatments.
If you don't eat really healthy already, learn to do so.
When you come out on the other side, and you will, get involved with some activities that you enjoy and make some new friends.
When you are healthier and back on your feet, maybe the ones who backed away will come back, maybe not, but you will be okay. Posts: 49 | From Florida | Registered: Dec 2003
| IP: Logged |
posted
I have been sick for about 20 years. I was diagnosed with fibromyalgia, chronic fatigue syndrome, and a long list of other assorted "syndromes" and "idiopathic" nonsense. During those years, I steadily got worse. I hated telling people because of the stigma associated with those illnesses. Many people thought I was just a nut case.
Finally, just about 2 months ago, I found an amazing doctor and was diagnosed with (very) late stage lyme.
During the past 2 decades, some of my friends - and my own brother - had the not-so-subtle attitude that all my health problems were in my head. It was a very difficult and lonely time. Now that I have been diagnosed with lyme, these same people believe I am truly sick. Nothing has changed, aside from the label stuck on me.
It's sad that people require another person to be defined by a label they're comfortable with before they can believe that person is truly sick.
Posts: 8 | From New Port Richey | Registered: Jun 2008
| IP: Logged |
posted
So far, I'm telling people about my 5 year old.
But now that he is having visual hallucinations/tingling headaches, don't think people understand.
He also has been vomiting for 2 years (infected '06, misdiagnosed at that time although he had flu symptoms & rash), only diagnosed after it affected his knee.
Husband is afraid to tell the school (doesn't want our child to be labeled as psychotic).
Today went to his pedi, requested a referral to a LLMD, was shut down. Said my son had "adequate treatment."
Pedi said, "You need to be careful to not over-treat" He has sent us to gastrologist, neurologist, and ears/nose/throat. Son having tonsils out)Oct 9th, MRI Sept 3rd.
Agrees that son is having hallucinations, but said, "sometimes we never find out why".
Doesn't want us to leave Boston hospital where he has seen all the "ologist", sending us to an infectious disease specialist now.
This is the last hoop I'm hopping through. Very discouraged, feel like no one is listening.
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi Songbird - forget about Infectious Diseases doctor. Most say the same thing - Lyme is all gone after a month of treatment.
And I'm not surprised your pediatrician wouldn't refer your son to a Lyme specialist. You'll need to find one yourself.
Go to Seeking a Doctor on this website and you'll get information about finding a Lyme-literate doctor in your area. Best wishes!
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
posted
Hi Songbird, I totally agree with lymelady. Find a LLMD asap. They are the only doctors that understand how to treat the disease. Really, Truly get the help. My thoughts are with you. You are not alone.
-------------------- abbyjo Posts: 257 | From Southern CA. | Registered: Jun 2008
| IP: Logged |
posted
Even though my husband doesn't talk much about having Lyme except to other Lymies, I tell people.
By mentioning his illness, we have received lots of great support, suggestions for wonderful LLMD's, suggestions for good probiotics, good books to read, and just a feeling that we are not alone.
Also, by discussing his symptoms, dear friends of ours were able to get immediate treatment for Lyme after a tick bite.
Our friend knew he was bit, got quite sick, but had no rash and tested negative.
Because he knew of my dh's experience, he pressed for meds immediately.
Sometimes, sharing our stories can help others avoid what we have gone through.
Don't give up. It's okay to get discourgade sometimes. This disease is exhausting not just for the people who have it, but also for their caregivers. Just take a deep breath and focus on helping your son get well, and yes, perhaps it is time to find a new doctor for your son.
Best wishes.
Posts: 11 | From Upstate, NY | Registered: Jan 2008
| IP: Logged |
toby67
Unregistered
posted
so i pretty much left my ex because in his eyes i was weak, lazy, and a hypochondriac... (20 years of hiding pain meds so i wouldn't have to listen to his grunts.) he almost had me convinced i was just falling apart! friends can be a pain too, they don't want to hear it, and i've decided i don't want it to define me in their eyes anymore... so i've found you guys instead! yes, it's frustrating!!!!
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[cussing]](graemlins/cussing.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic